What To Do When Someone Tells You They’re Autistic
At the beginning of this year, at age 50, I discovered* I was autistic.
It took me a while to work up the confidence and courage to tell people, especially after my first attempt was ignored (by someone who used to be one of my closest friends). As far as I know, the majority of my family, friends, and acquaintances are neurotypical. Sharing my identity has been a mixed bag. Most of the folks I’ve told individually have been receptive, but only a tiny percentage have been genuinely supportive. My latest attempt to come out, in an appropriate way to what should have been one of the most receptive and accepting groups, wasn’t well-received and left me feeling heartbroken.
Every single time I’ve shared with someone that I’m autistic, I feel emotionally exposed. Even if I appear calm, even if I’m able to casually and seamlessly slide it into our conversation, I’m actually feeling incredibly nervous and vulnerable. Telling you is a huge deal for me in every way. Your reaction is helping me figure out what being autistic means for me and my future. I’m also hoping that you value our relationship and accept me as I really am (especially now that my ability to mask has degraded, and I’m deliberately beginning to unmask some of my natural behaviors).
I thought sharing examples of what not to do if someone tells you they’re autistic might be helpful. Please note that these examples, and the additional recommendations for what to do, reflect my personal experiences and preferences. Autism is a spectrum of spectrums. Each and every autistic person is wholly unique. Something that makes me and many others feel supported and embraced, might offend someone else.
Don’t Ignore It
Hopefully, you were listening when I told you. If I don’t think you heard me, I’ll try to find a way to repeat it. We don’t need to mourn, celebrate, or discuss my disclosure. That said, please don’t ignore it altogether, change the conversation topic, and then fade away.
Do Acknowledge It
I imagine you’ll be surprised when I tell you. That’s an understandable reaction — I was too. Diagnostic criteria for Autism Spectrum Disorder (ASD) have long been biased towards a specific presentation seen most often in white boys in the global north (which, for most of our lives, was also the only way the media represented ASD). My autism profile, like many other people raised as female or in more inclusive cultures, is markedly different from that. That’s why nobody realized I was autistic until now. People like me who self-identify (or are formally diagnosed) later in life are called late-identified (or late-diagnosed).
I imagine you might feel a bit uncomfortable when I tell you. I get it — I’ve felt that way more than once since my discovery. Only 3–4% of people are autistic. I imagine I might be the only person you know with autism, or this might be the first time anyone has come out to you about being autistic.
I imagine you don’t know much about the full spectrum of autism, all the myriad of ways it can present and impact someone’s life, or that Asperger’s Syndrome was renamed Level 1 ASD in 2013. I won’t hold that against you — I didn’t either, not until I started educating myself.
I imagine you might need some time to process or not know how to respond. No worries — it’s a lot to take in, especially since I essentially sprung it on you. If you need time, please say so.
When I tell you I’m autistic, I don’t know how you’ll react. There are an infinite number of ways you could respond. I’m hoping you’ll say and do something positive in a way that’s authentic for you and our relationship. I’m hoping you’ll be kind and compassionate (not only during our conversation but also afterward). I’m hoping our relationship will continue. At the very least, I’m hoping you’ll be polite and appreciate that I shared this with you.
Don’t Doubt Me
I don’t lie or blow smoke. I tell the truth (even when I’m in situations where I know that society expects or wants me to flatter or lie, I’ll do everything I can to find at least a tiny nugget of truth I can say or weave into a general platitude). I’m happy to share the story of how I realized I’m autistic. However, unless you’re someone who currently makes a living by formally diagnosing autism, please don’t doubt my disclosure or ask me to show you proof.
Do Believe Me
Over the past 10+ months, I’ve: done extensive internet research, read more than a half dozen non-fiction books, read at least a dozen novels with autistic-coded characters, watched more than a half dozen tv series and movies with autistic-coded characters, attended some online meetups with other autistics, played devil’s advocate and angel’s advocate with myself about my self-identification, and recently received confirmation from a therapist who specializes in autism. So when I tell you I’m autistic, I’m hoping you’ll believe me.
Autism, like other forms of neurodivergence, hasn’t ever been valued by our society. As a result, being autistic is a disability. One that I’ve come to realize has negatively impacted me in a wide variety of ways my entire life (every single day, from my earliest childhood memories to today). It exacerbated or directly caused many of the traumas I’ve experienced. You might not know much, or anything, about those various traumas. My professional accomplishments might be impressive. I might look much more like your mental image of a privileged person than the one you have of a disabled person. None of those things changes the fact that I’m autistic. I haven’t received any special awards, prizes, or privileges for it (and don’t expect I ever will). There are zero compelling reasons for someone to say they’re autistic if they’re not. So when I claim and share my autistic identity, I’m hoping you’ll trust I don’t have ulterior motives.
Don’t Expect Me To Educate You
I typically only share that I’m autistic when I’m in a positive mindset and energy-state. I’m still passionate about the topic, so I generally enjoy discussing what I’ve been learning (especially if you’re genuinely curious). That’s not always the case, though. Living with autism is exhausting and stressful. I may lose energy quickly if our conversation feels fraught or if your questions feel more like an inquisition. Feel free to ask if I’m open to sharing my experience or knowledge, but please don’t expect me to be your sole source of information or get offended if I’d rather not discuss it further.
Do Be Curious & Learn More
Autism is often a harsh disability, but it also comes with some spectacular gifts (things other than the genius or savant so often portrayed in the media). It’s a spectrum of spectrums with a wide variety of negative and positive characteristics in seven areas: Sensory, Body, Learning/Thinking, Emotions, Passions/Talents, Social, & Other. So when I tell you I’m autistic, I’m hoping you’ll care enough about me to learn more about how my autistic way of experiencing the world and interacting with you and others has and will continue to impact me in my past, present, and future.
Don’t Be Nice Or Cruel
My mom taught my brother and me how to be polite in every situation. When we moved to Florida and Texas, that expanded to include what’s often called southern hospitality. There’s a massive difference between being polite, nice, and kind. Living in the south gave me a master’s degree in the difference.
Politeness is having good manners and treating everyone with common courtesy (such as acknowledging someone’s presence with a brief greeting, saying please or thank you whenever appropriate, exchanging pleasantries, making small talk, and not touching someone without permission).
Kindness extends politeness into consideration and care of others through congruent words, actions, and energy. It can take any form but is often expressed via small but meaningful acts of generosity (such as active listening, complimenting and crediting people for their contributions, staying in touch, or following through after making an offer).
In my experience, niceness can’t be trusted. Nice falls somewhere between overblown politeness and performative kindness. Usually, it’s when a person doesn’t put their words into action (such as greeting me with a hug and saying how much they miss me, but then avoiding all opportunities to chat and never accepting any of my invitations to meet up). Sometimes it’s when a person’s energy is off in a meaningful way (such as offering to help me with something and following through but complaining the entire time or making me feel guilty afterward). Even if it’s well-intentioned, niceness is fake kindness and hurts my feelings.
Please don’t be “nice”. If you don’t like me, be polite. Life can get busy for all of us. So if you don’t have the time and energy to follow through on a social invitation or offer of support, don’t make one until you do. And, obviously, don’t ever be cruel — this isn’t middle school.
Do Be Polite, Kind, & Compassionate
I’ve already shared my definitions of politeness and kindness. Compassion is non-judgemental empathy and kindness offered freely to oneself as well as to others. When I tell you I’m autistic, I’m hoping you’ll take the time to look beyond the label and any preconceived notions, surface-level assessments, or fears you might have. I’m hoping you’ll see our shared humanity and treat me the way everyone deserves (with politeness, kindness, and compassion).
Don’t Say I’m Brave
I value bravery. I agree that my mental and moral strengths enable me to face (and often overcome) a variety of difficulties, fears, and dangers. Why then, more often than not, does someone telling me I’m brave feel condescending and/or insulting? I suspect it’s because they’re being nice instead of kind. “Brave” seems to be a socially-acceptable word for someone to say when perhaps they contemplate themselves in a similar situation and can only see stigma and shame. Please don’t tell me I’m brave, pat me on the shoulder, walk away, and then afterward avoid me.
Do Share What It Means To You
I’ve had a few unexpectedly touching conversations after sharing that I’m autistic. I’m *not* talking about the ones in which people: share stories about how their friend started a charity after their autistic child killed themselves; how they still like the member of their friend group who recently came out as autistic; or how proud they are to be a regular volunteer for people like me at their local mental health charity. Instead, the ones that move me the most are when someone shares how my disclosure affected them. So far, those conversations have been about: someone’s invisible disability, someone’s loved one who is autistic and would be thrilled to hear about my side project, or someone’s sneaking suspicion that they themselves might have autism. When I tell you I’m autistic, I’m hoping our relationship will deepen (and conversations like these connect us in new ways and strengthen our bond).
Don’t Avoid Or Ostracize Me
Every single autistic person is wholly unique. You might have heard autistics hate eye contact and conversations, but I don’t. You might have heard that autistics don’t have empathy or aren’t interested in friendships/relationships, but that’s false (for me, and as far as I know, for all autistics). Please don’t avoid me. And, obviously, don’t ever ostracize me — this isn’t middle school.
Do Embrace My Differences & Include Me
The unique way I perceive the world and think about things powers my ability to be creative and innovative. It powers my moral conscience and the value I try to add to everything I do. I wouldn’t be me if I weren’t autistic. So when I tell you I’m autistic, I’m hoping you’ll embrace my differences (not just from neurotypicals, but also from my previously masked self). I’m hoping you’ll include me (even when I’m not masked). I’m hoping together we can help our community (and eventually our society) evolve so that everyone, regardless of their differences and/or disabilities, always feels like they belong.
Thanks for reading! Would you like to better understand how it feels to discover as an adult you’re autistic? Or to see 33 ways I manage my autism?
